In my case, I did not get recogniseable PEM until several *years* into the illness. I did not have it at the time of diagnosis (which was based mostly on chronic EBV titers and other blood/gut stuff.)

Similarly (and this is apparently not uncommon) I began with hypersomnia, sleeping unmoving from the corpse-like position, for ten hours solid. It wasn't until several years later that the sleep problems began.
In general, the illness looks very different seven years down the road than in the years it began.

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I want to second what leela said. Thou one can get a much clearer view if it's ME/CFS or not by the PEM.. not all cases do have this happening at first. I didnt have PEM for a least the first year (I just had on and off bouts of bad viral symptoms for first year and then after that severe hypersomnia. Ive no idea at what point the PEM came in but it certainly wasnt in the first year of my illness).

Anyway who doesnt have clear symptoms of what this may be.. needs to stay open to what the illness could be but the PEM can certainly help to know one has a right diagnoses. Be wary otherwise of wrong diagnoses.

So I think i will just try to ease the peripheric symptoms , like pounding in head+the tension in neck but I don't know if it is possible, i feel it just arrived with the fatigue.

leela: Yes your are right I am sure the exhaustion is due to a immune dysfunction since it came after a cold.. I feel I meet some criteria of the ICC, but not a 100% to be ME. I sleep a lot too (12h a day) , that is why a doctor told me about modafinil (have you heard of it?)

Dmitri : Thank you for your answer ! Did you manage to ease those symptoms with some drug or kinesitherapist or osteopath ?

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In December the 1st of 2012 , I felt heartbeats in my head and a sudden extreme fatigue. The same day, I had a cold which lasted 3days

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Given what you've said about your cold. I think it is quite questionable if a 3 day cold gave you ME/CFS and hence are thinking its very likely to have just been coincidental.

Colds are not a common trigger for ME/CFS and besides that often the illness which goes on to trigger off someones ME/CFS is often a bad one eg Studies have shown that the more severe a persons mono (EBV) is the more likely they are to end up with ME/CFS..severity plays a part.

There is some relationship between this illness and the degree of sickness one had. The illnesses which seem to be triggers to ME/CFS are gastro ones with gut involvement, EBV, CMV, Ross River Fever, Giardia

So i went to an osteopath. He said that the pounding in head are linked to the fatigue, because I try harder to focus and the muscles are tense. Idk. He also tested me with an oligoscan (i had never seen it before, it is a device to see if you're intoxicated with heavy metals : http://artdentaireglobal.wordpress.com/ )
@Creekee Well, i tested for lyme as well-i tested for a lot of things, and i don't have it. Went to a psychiatrist too, no depression.
So, this is a fatigue somehow triggered by the cold, but I don't see any testimonies of post-cold fatigue, @taniaaust1 it is true. But it was during an exam period, so maybe the chronic fatigue is a result of the cold+the stress that triggered a dysfonction.

It is frustrating because there are so many causes of fatigue. But if other people heal, there's room for hope ( optimistic speech ..haha.)

So, this is a fatigue somehow triggered by the cold, but I don't see any testimonies of post-cold fatigue, @taniaaust1 it is true. But it was during an exam period, so maybe the chronic fatigue is a result of the cold+the stress that triggered a dysfonction.

It is frustrating because there are so many causes of fatigue. But if other people heal, there's room for hope ( optimistic speech ..haha.)

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Exam stress with a cold. now that would be more of a ME/CFS trigger. Many get ME/CFS while at college and exam stress and the too many late nights which come along with having to do exams, can be one of the triggers for some of us including it was for myself.

There was recently a study done (not a ME/CFS study) and someone posted it at this site on how a very short time of not getting enough sleep affects the immune system negativity. If Im remembering correctly the immune system was affected in less then one week.

Does anyone feel the muscles of their neck tensing up against their will? ( like a constant tension ? )

I wonder if every body feeling tired inevitably feels a tension in neck ? (it is unbearable, i can't focus with that)

Thank you...

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I always experience this this, but tension and pain projects more into the sides of head. When I get up, I get a rush of pain and pressure in these areas, often accompanied by blackness in vision. Does this happen to you? Rotating neck is hard too, if I do it too fast, I get a sudden rush of heat and pain going up my neck and into head.

No, I don't have any headache. What you experience is tension headache, am I right ? I have read this is due to an important tension in the neck muscles...

My neck tenses up every time , particularly when i am motionless. At this moment it is more difficult to rotate my neck.

( I hope i am clear enough )

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I was asking talking about neck symptoms in your case. I think my tension headaches are caused by neck. I noticed that it's always more difficult to rotate my neck to the left than right. The way it's positioned during sleep is crucial. I remember testing a large amount of pillows to find one that leaves the least symptoms after waking up.

Sleeping on stomach produces the worst symptoms, probably due to how neck is held in disarray. It typically causes the worst neck/head tension symptoms on the following morning, and very deep blackness in vision after standing up. The pain fluctuates throughout the day, typically the worst in first half of the day.

The only relief I can think of is quite insignificant. Warm water via shower slightly eases tension. Pressure on the areas of pulsation can also help, f.e wearing a tight hat to lower the pain on the sides of my head.

I had those symptoms and they persisted for about 2-3 years. The neck pain and stiffness were by far most pronounced. I would say severe. One would think some form of meningitis.....I would probably have done even better on the anti-viral treatment had I done it right away, rather than years into it. But finding a doc willing to Tx was the problem.

Hi, I tried a drug called tetrazepam and it improved my symptoms of stiffness of the neck. But it has a sedative side effect so i only take it before going to bed.. Dmitri have you ever tried something similar ? It's not miraculous but it helps a bit

Hi, I tried a drug called tetrazepam and it improved my symptoms of stiffness of the neck. But it has a sedative side effect so i only take it before going to bed.. Dmitri have you ever tried something similar ? It's not miraculous but it helps a bit

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I am unable to take any drugs, so unfortunately not. I wonder how pain relief would work in such an instance e.g would pain be numbed while pulsation still persists?

I had those symptoms and they persisted for about 2-3 years. The neck pain and stiffness were by far most pronounced. I would say severe. One would think some form of meningitis.....I would probably have done even better on the anti-viral treatment had I done it right away, rather than years into it. But finding a doc willing to Tx was the problem.

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Tristen,

Please watch this video on youtube by renowned ME researcher Dr. Kenny De MeirLeir, he is out of Belgium and although all Belgians speak English this is in Belgian with subtitles. He uses GcMAF to treat patients of which I take. This video was the first to allow me to understand my pain. Hope you like. It's abpout seven minutes. Not Bad.